Community-based participatory research: Partnering with communities

Clinical researchers strive to improve outcomes for the subjects of their research. Whether testing a novel drug, procedure, or behavioral intervention, the goal is to positively impact the recipient’s health. It is the academic researcher, therefore, who identifies the health need and then devises a strategy to address that need. Contrast this to research in which the subject is not only the beneficiary of the product of the research but is a co-creator of the research from its inception to completion. This participatory approach to research will be the subject of this article. Specifically, we will describe community-based participatory research (CBPR), its importance, its use, and how stroke specialists can employ this research approach.

CBPR Defined

Community-based participatory research can be defined by deconstructing its name. It involves partnership between academic researchers and community stakeholders. How is community defined? Although the first instinct is to define community based on geographical boundaries, community is better defined by common identity irrespective of geographical limits. Members of a community share common values, interests, and have an emotional bond.¹ Therefore, a community might be identified based on race, gender, religious belief, sexual orientation, or a community-based organization united for a particular cause. CBPR is participatory, the community and academic partners work together to devise a research question, carry out the research, and disseminate the findings. CBPR is committed to bi-directional learning. Community members, who may have had limited previous experience with research, acquire skills that can be used to further promote their causes and in future projects. Academic researchers must take care to be transparent, equitable, and culturally sensitive; empowering community members to be shared decision-makers in the research process. CBPR enables researchers to obtain a better understanding of the community’s strengths, challenges and opportunities. This benefit is of particular relevance in health equity research, in which cultural and socioeconomic differences between the community and academic researchers potentially impede identification of problems and discovery of their root causes. Partnering with the community will by no means eliminate this barrier but can enhance cultural understanding, mutual respect, and increase insight into the social and physical conditions as well as policy environments that are impacting the health of the community.²

Consistent with other forms of dissemination and implementation research, CBPR translates research findings into practice.³ Engaging with the community throughout the research process produces results that have greater relevance to the community and can be more readily sustained to support the community’s needs.⁴ Academic researchers are committed to the community during the conduct of the research and after its completion. Although a single project has the potential to be impactful, it may take years to advance a community’s agenda. Academic researchers have an ethical obligation to equip the community with the tools needed to sustain an intervention or become successful change agents beyond the project period.⁵

Examples of CBPR in stroke research

A CBPR approach can be used for any research question in the field of stroke that would benefit from collaboration between the community and academic researchers on the design, implementation, and analysis phases of the research project. Examples include research on stroke preparedness, the ability to recognize a stroke and call 911; primary stroke prevention; secondary stroke prevention; and stroke recovery. Past projects using CBPR have examined barriers and facilitators to accessing medical care pre-and post-stroke⁶; interventions to increase knowledge of stroke symptoms and control of stroke risk factors^6–8; and strategies to increase participation of diverse populations in stroke research⁹. Hypotheses for these research questions would not differ from non-CBPR research. What defines the CBPR approach is the partnership between the community and the academic researchers in conceiving and carrying out the research.

Deciding if CBPR is right for you

We hope by now you are convinced that CBPR is a combination of research and social action. The appeal of this research approach is the opportunity to identify research topics that are important to the community and therefore have the potential for great impact- whether it be the development of a new intervention or to stimulate policy change or social action. At its foundation, CBPR is a community-academia exchange of knowledge and life-experiences. Thus, a junior clinician scientist who chooses a career in CBPR will embrace interdisciplinary teams. For example, our current academic-community partnership includes academics with expertise in vascular neurology, health behavior and health education, implementation science, nursing, health services research and health economics. Our community partners include leaders and members of community organizations, faith-based organizations, senior housing leaders, city council, nursing, safety-net hospitals and community health centers. This interdisciplinary teamwork allows for new, innovative ideas and is fundamental to creating a culture of change for the betterment of the project and the community.

A second consideration of neurologists considering a career in CBPR is the ability to accept or embrace some chaos. Working with communities is far from the structure of clinical trials. On multiple occasions, our team planned to enroll a certain number of participants only to have more participants attend the event. As a result, we ran out of monetary incentives causing the academic PI to use personal funds to reimburse participants. This anecdote shows the power of CBPR in terms of community commitment to the project but also the need for the research team to be nimble.

Mentorship

If you have decided you would like to pursue a career focused on CBPR, we recommend seeking out established CBPR networks. While unlikely to be within neurology, most universities have a group focused on CBPR. A good place to start is the community engagement core of your institution’s clinical and translational science award (CTSA). Another option is the school of public health, particularly departments such as health behavior and education or population and family health. Most faculty involved in CBPR will have some interaction with these groups. Select the research group most closely related to your area of interest and ask to participate. Then begin to establish community partners within or surrounding the current partnerships. If your institution does not have established CBPR networks, we recommend identifying community organizations with shared interests. Meeting with these organizations is the first step to establishing a community partnership. Mentorship can be found in disciplines similar to CBPR, such as implementation science or community psychology. It does not have to be a perfect fit. For example, my CBPR mentor has long-standing community partnerships primarily focused on youth violence prevention in my community of interest. Through this network, I was able to establish orthogonal community partnerships focused on stroke prevention and preparedness.

Funding

After establishing a community-academic partnership centered around a shared mission, grant funding will need to be secured to fund both the academic and community teams. Academic researchers should be mindful that community partner organizations often have little extra funding and resources to contribute to unfunded pilot work. As a result of this common challenge, academic institutions are beginning to support community partnership development and pilot studies. Funding later stages of the project requires larger dollar amounts, such as can be awarded by the Centers for Disease Control and Prevention (CDC), National Institute of Health (NIH) or Patient-Centered Outcomes Research Institute (PCORI). PCORI is a particularly interesting opportunity given their commitment to patient engaged research. Foundations are another source of funding, particularly the Robert Wood Johnson foundation and the W.K. Kellogg foundation. For funding opportunities outside the US, we recommend starting with national funders such as the Canadian Institutes of Health Research or the National Institute for Health Research in the United Kingdom and also considering community and disease specific foundations.

Caveats

One challenge for junior faculty members is a slow start-up period. This is particularly relevant to a career in CBPR where years can be spent developing and securing trust between the academic and community partners. This includes time spent in the community participating in events beyond the scope of the research and in face-to-face meetings with community stakeholders. As an example, our academic team volunteered at water distribution centers during the height of the Flint water crisis displaying our commitment to the community and gaining a greater appreciation of the community’s challenges. The time spent on solidification of our community partnerships during the start-up period more than offset the delay in academic currency, published manuscripts, grants, and securing tenure. While little can be done to increase the pace of establishing authentic academic and community partnerships, we recommend a few strategies to buffer the academic productivity challenges; 1) partner with other researchers, this will broaden your skillset and increase the opportunity to collaborate on manuscripts; 2) develop complimentary research skills, for example health services research pairs nicely with CBPR given the focus on policy relevant research questions and the ability to explore issues at both the community and national level; 3) draft manuscripts focused on project development and the partnership. These will inform other research projects; and 4) discuss with your department’s leadership about extending the tenure clock or changing the requirements. If CBPR is your passion, do not avoid it due to the longer start-up time. It is more than worth it.

Conclusions

Using a CBPR approach can improve the relevance and impact of your research. Studies of stroke prevention, stroke preparedness, and stroke recovery can especially benefit from community-academic partnerships. Regardless of your specific area of interest, we hope that you will consider using this approach in your future stroke research.